My Preterm Story

We are grateful for everyone wanting to share their family’s experience and preterm story! By sharing the personal stories we aim to encourage other families, who are on a similar journey, and show them they are not alone! Also we think every single story deserves attention and need to be heard!

If you would like to share your preterm story as well, please contact us and we would be honoured to include it. #MyPretermStory

Read the stories of Diana, Victoria, Gray, Alby, Fotini and Mattija below:

(Trigger warning: blood and childbirth)

Meet Diana

photo of baby born preterm versus child later
© Oleksandra Balyasna

„My daughter Diana was just over 1 kilo of weight when she was born.

Emotionally it was a cocktail of stress, shock, unknown and being out of control. I felt like I was the very first one on the planet to deliver a baby so early, so tiny, so vulnerable and fragile. I had no idea how I could reduce the level of pain and bring her more comfort. All in all, it was not the maternity I dreamt of. I have never heard of preterm babies during the courses for pregnancy preparation with my partner.

One of the biggest memories was the moment when I heard ‘you can Kangaroo her and hold her’. This was the precious half an hour when all the NICU was busy running around and I was experiencing an amazing journey of bonding, getting to know my daughter closer, feel her heartbeat, hold her and smell her for the first time since she was born. I did not know at that time how beneficial is skin to skin both for mother and the baby.”

My biggest challenge was to gain confidence to touch her. I was unsure if this was hurting her and it took me some time to get how to lift her up, place her back into the incubator or hold her in my arms.

Among challenges after the discharge was to find the right family doctor that would understand special needs of a premature baby, to organize by ourselves the follow-up treatment, know how to monitor the ROP, heart development, orthopedic checkups, neurological development. We had to become familiar with many new medical words.

My family was my biggest support that was next to me all the time. My father, even though being scared of the small size of my daughter was happy to support me with other tasks. For example, he was washing, ironing and disinfecting all the clothes for our little fighter. My mom was cooking and my sister was searching for tiny socks, clothes, special pacifiers of a tiny size.

Special memories: All Christmas holidays we stayed in the hospital. Diana’s father had a Christmas hat and even came on New Year‘s eve to support his girls.

What supported me: Being in the hospital I could remember that one of my friends told me long time ago that she was born premature herself. My friend – a beautiful and smart lawyer and a person with a big heart – was a reminder that premature babies can survive, thrive, shine and can have no trace of being born too soon. I called my friend and said: tell me all how was it for you!

Today: Today my daughter is taller than me, active, artistic and a happy child, who likes to read books, write stories, make jewelry, draw. While being in the incubator she was crawling up and down and was showing her character. Nothing changed – now she stands for her wishes and expresses her ideas and thoughts without any doubt.

What I would like to say to those who go through the NICU journey today:

  • May positive preemie stories support you, peer groups are very helpful too.
  • Ask for the psychological support for you and your partner together. This is not something you go through daily and any preterm journey is stressful. Give yourself some support.
  • Involve your family and friends in help whether this is babysitting your older kids, cooking or other.
  • Maybe your journey is not going as planned, but for sure you are not alone in it and please feel all the support of our huge community behind you with similar experiences, always open to talk, share the story and inspire.“

– Oleksandra

Meet Victoria

Victoria’s Journey Home

photo of baby feet compared to parent's hand
©EFCNI / Foto Video Sessner GmbH

The road leading to you

“In the fall of 2013, I was on cloud nine, gleaming with the fresh news that I was pregnant with our second baby. Our first child was not even two years old at the time and I was lucky enough to dedicate my days to her while we awaited her new sibling’s arrival. But not long into the pregnancy, a chilling scare came one day as I began hemorrhaging and was rushed to the emergency room, convinced that the only outcome for this mass amount of blood would be that my child was not going to make it. I was quickly diagnosed with placenta previa and put on prolonged bedrest until the end of my pregnancy. This diagnosis was such a relief, one of the first miracles to show its face, because if I could just sit patiently, rest and let our baby grow and develop inside me, there was still a chance of survival. Sitting sounded easy at the time, but I had a 21-month-old who was not at all interested in sitting all day. I also had no pain, which made resting for months on end a mental task not easy to tackle with a toddler. It wasn’t until my mother-in-law put it so bluntly that I finally understood the gravity of the situation. “If you want this baby to live, then sit down and do nothing. Otherwise, do as you wish.” Thankfully shocked back into reality, sitting down and not moving was exactly what I did for the next 4 months. My husband and I were living in a foreign country with no family nearby, so the grandparents began visiting in rotating shifts of weeks and months to provide the constant support needed.”

Your arrival

“At 24 weeks gestation, I was hospitalized with further hemorrhaging and time had never been more critical, because I needed it to accelerate to a future “safe” week. I studied the fetal development charts constantly to see which parts of the body had already developed for the life growing inside me, and also what risks were to be faced if born at each progressive week.

On April 17, 2014, Victoria was born at 28 weeks gestation by emergency C-Section after her heartrate accelerated dangerously high due to the stress she was experiencing inside me. My body was no longer safe for her.  When she was born, everything happened so quickly that I did not even realize she had come out since her undeveloped voice did not make a sound. Then away she went, without a kiss or embrace, whisked directly to the NICU to be connected to feeding and breathing tubes in an incubator made of steel and glass. I imagine it seemed like the abyss to her. She must have felt abandoned and confused. I am so sorry that she had to start life not knowing how much she was loved and that we did not leave her. Finally, on Easter Sunday, three days post-birth, I was able to hold her for the first time.”

Your journey from my view

“The NICU is a world of its own, dimmed for the sensitive eyes of the tiniest of residents, yet tense with the noise of constantly sounding alarms. Soft with mothers and fathers practicing skin-on-skin with their newborns, yet explosive with emotions for the micro-steps forward sequenced by terrifying falls back. There are no strangers here, as all parents and infants in this room understand each other with a simple look and deep invisible connection. We form an instant team of support, love and compassion, all while feeling strangely disconnected from the outside world.  And the babies, they tackle their challenges like professionals, sleeping, breathing, growing and developing outside the womb, alone for countless hours, in the hopes of someday graduating to Home.

Victoria stayed in the NICU for two and a half months before coming home. Today, fast forward to 9 years later, she is thriving and has the same character she had in the incubator. She is sensitive with pure, animalistic instincts and she puts her whole heart into everything she does. She is decisive and persistent, yet patient. She never gives up until her objective is accomplished to the best of her ability.  And over the years, she has voluntarily offered us different glimpses of the memories she has of her birth and NICU journey. She is our brave little miracle who gave us the hope that she knew we were there loving and routing for her all along.”

Afterthought

“After all these years, I am surprised by how many unprocessed feelings I hold deep inside. Speaking and writing about Victoria’s story surfaces enormous waves of emotions. I thank EFCNI for providing a voice and platform to do so.”

Messages for you

“The most important message that I would relay to families who are going through this harrowing time is that you are not forgotten.

To extended families and friends who wish to provide support, tread lightly with words and go heavy on food and babysitting services. Though we may seem calm, we are not at our best in this situation whose existence we never considered until now. Congratulations or It will be fine do not work well in this circumstance.

To the fathers, brothers and sisters of preterm babies, you deserve a standing ovation for your endless faith and efforts in keeping things balanced while supporting the mother, infant and each other through this uncertain journey.

To the mothers, know that we all had trouble breastfeeding small mouths in hospital chairs…Victoria did not attach until the day she came home. So don’t give up, there is nothing more natural once free from extreme circumstances. Also, your presence works miracles. They chose you and know you are there with them.

And to all preterm babies, those who thrived, those who are in the middle of their battle and to the angels who had to go in the direction of peace, no words can express my infinite respect for your unmatched strength and bravery. Thank you for opening my eyes. You are seen.”

– Caroline (© CCS 2024)

Meet Gray

My Preterm Story about a mother and her infant in the neonatal intensive care unit
©wethetzn

“Hi, I’m Mommy Mei, a first-time mom to our 34-weeker baby boy Gray. My husband, Gerald, and I really prepared for this pregnancy and when we thought we were ready for this, we faced this challenge of giving birth at 34 weeks.

We are aware that there are premature babies, but we never thought we will have one. And what made it even more challenging is when it happened during the first lockdown in our country (the Philippines) due to COVID-19. There were no COVID vaccines or testing kits yet.

On the 17th day after the lockdown was announced, I woke up at around 5AM to pee, which was very normal to me during my pregnancy. But I was shocked to see blood on my underwear, and when I called my husband, who was still sleeping, he found out it was dripping from the bed on the way to the bathroom.

I had spotting during my 20-week pregnancy, so I knew this time was different. I called my doctor and immediately went to the hospital. We had to go through a few checkpoints and explain our situation. We even had to change our hospital because apparently, the hospital where I was supposed to give birth as planned, already had COVID cases.”

Baby Gray was born

“I will never forget the first thing I said to my doctor — “Is my baby going to live?”. After 24 hours of observation, my doctor decided to schedule me for an emergency C-section the next day because our baby once dropped his heartbeat. My ultrasound also showed I had placenta previa, which explained the bleeding.

After our baby was born, we didn’t get to have immediate skin-to-skin because of COVID protocols, and also because he couldn’t breathe on his own, so he needed to go to the NICU as soon as possible.

Few hours later, I was allowed to go to the NICU to breastfeed and for Kangaroo Mother Care (KMC). It was mixed emotions. I felt happy our baby being safe, but at the same time sad for my husband who could only see our baby from the window for 15 mins a day. Why are fathers not allowed in the NICU? They can also provide KMC!

I asked how long our baby needed to stay in the NICU. She said she couldn’t tell. It can go for months. I really tried to compose myself, but I just burst out crying. A lot of thoughts ran through my mind, blaming myself for what went wrong, what have I done wrong.”

Support

“My husband, on the other hand, was also anxious but tried to compose himself. He started joining FB groups for premature babies and parents. Trying to get as much information as he can. Reading through posts on the FB groups helped us to be more positive and hopeful. Our baby is fighting for his life so we should too. Thankfully our baby was recovering well and after 9 days, he finally graduated from NICU.

He’s turning 4 years old this March, and he’s a very happy and active kid. Who would have thought that he’s the baby who couldn’t even breathe on his own?

We’re so thankful to the NICU doctors and staff, and also to other parents who shared their stories. And this is why we also want to share our story. To raise awareness and to help parents be more positive and hopeful.”

– Mommy Mei

Meet Alby

artwork showing siblings that meet in the nicu for the first time due to the baby being born preterm
Copyright @emmathorpart

“I started to have some cramping on the way back from my daughter’s swimming lesson. When I got home, I called the hospital and they said I should come in to get checked out. I woke my husband Phil, who had just finished a night shift in the ICU and asked him to take me to the hospital to get checked out. My cramping steadily increased as we drove and I said, to a surprised and white knuckled husband, “I think you should drop me at Emergency and go and park the car”. “Really?’ was his reply and I said “Yeah, Really”.

After my first child was born overdue and in a routine fashion, this is not how I envisioned my second birth to be. Alby was born spontaneously in a corridor on a hospital gurney at 26 weeks and 3 days, whilst I was being rushed to theatre for an emergency cesarean that became no longer necessary. I watched as they tried to rescitate this limp, shiny red, wisp of a boy and grieved for us all.”

Saving a child feels a lot like losing a husband

“Apparently, 84% of marriages of parents with special needs children break down. I cannot relay how tough a time this was for us and our marriage. I had a young daughter who needed me, a husband who missed me and a baby in a box that I felt drawn to. I felt like I was been torn in so many directions and doing nothing well.

When he was born, Alby weighed 1100 grams (2 lbs 4 oz), fortunately a good weight for his age. He had many of the typical setbacks that extremely premature babies have, jaundice, anaemia, eye problems, brain haemmhorage, heart issues and breathing issues, but battled and became stronger and after 78 days between the Mater Mothers’ Bisbane and Toowoomba Base Hospital Special Care, Alby was able to come home.”

Stereotypical Behaviours

“His young life was a constant game of catch up. Extreme prematurity causes many developmental delays and made it very difficult to determine the reasons for his behaviours. Was he just playing catch up or were there other factors in his frustrations and “quirks”?

Alby is not an obsessive child, he does not have a particular insterest but ever since he has been able, he has had something/anything in his hand. On this particular day, when Alby lined up his cars, I thought absolutely nothing of it, apart from being thrilled that he was doing so well with his fine motor skills. It was only after Alby’s Autism diagnosis that I looked back on this time and thought “Ahhh”.

Today, my 26 weeker is a teenager. It has been a wild and wonderful ride. He is thriving. The support we have had from our families, the incredible health system, my friends, his school and peers has been very humbling.”

– Emma

 

Emma Thorp created the mixed media works on paper exhibit “Early”, that chronicles 8 years since Alby’s birth and his diagnosis with Autism and ADHD. With this exhibition Emma hopes to give people a glimpse into a world that can often be very insular, private and all-consuming. She is also honoring the heroes in the community who work tirelessly alongside those families to ensure the best possible outcomes for the future.

Click here to see the full catalog of the exhibition digitally.

Meet Fotini

Photo of a baby born preterm now vs then
© Fotini Pesmatzoglou

“My name is Fotini and I am Greek. I live in Thessaloniki. I was born and raised in Germany until I was 6 years old.  My parents were Greek and at that time they were working in Germany. I was born in Bietigheim-Bissingen on 29th May 1970. When I was born my mother was already 40 years old and had 3 children. I faced the world at 27th week and 1-day gestation and weighing 900 grams only. I had to stay in the NICU for 3 months. My chances of survival were slim. Doctors thought I would have some kind of disability. Because organs of preemie babies aren’t fully ready to work on their own, preemies are at risk for health problems. In general, the earlier a baby was born, the greater their chances of health problems. But miraculously I was totally healthy in my life and I never got sick. I was growing up living a healthy and fulfilling life with the most important supporting factor, the love and care of my family, mainly the care of my older brother and sisters because our parents were both working.

Early interventions, support systems, and appropriate medical care can significantly mitigate the long-term effects of prematurity. Luckily, I was able to catch up and develop just like other children their age. Ever since I was little, I wanted to learn many things and catch up with the time. Always in a hurry, always fast, always busy and I liked that. I remember in my early childhood being sad because I was very weak but I developed a strong leadership personality and year by year my confidence grew. I felt the transformation of the ugly duckling into a swan.

Today

I have successfully completed a university education and in a few months, I will soon complete my second master’s degree at the Faculty of Engineering of the Aristotle University of Thessaloniki. My favorite activities that add color and intensity to my life are music and the pen of writing and poetry together with the blessing of being mother of four children. Μy children were born healthy and normal and now they are all adults and I am very proud of them.

So please don’t lose your faith. I never stop believing in miracles. Preemies and their parents are warriors. They fight battles with unknown ends. Because life is something to fight for.

When it comes to preemies every day counts. It’s not a countdown. It’s a count-up! They are tiny fighters who become Great Life winners!”

– Fotini

Meet Mattija

Photo of a baby born preterm on the chest of his mother
©Brenda Prato

“Our son was born at 27 weeks gestation. The pregnancy was normal and at the last doctor’s appointment, which was one week prior to me giving birth, the doctor told me that given all the circumstances, he is expecting a normal and smooth pregnancy. However, a few days later, I woke up to rush to the toilet. I was ashamed because I thought I could not control my bladder. I was also experiencing abdominal pain. I visited two general practitioners who told me that I only have a urinal infection which can be treated with antibiotics. On the third day I started seeing a lot of blood and my husband rushed me to the hospital. I was informed that it was not a bladder problem that I experienced three days prior but my water had broken. I was examined and the doctor’s words still echo through my head, “I see his hair, you are in labour.” Four hours later, at 11:31PM on 15th January 2022, Mattija was born, weighing 1180g and 29cm tall. He was wrapped in some sort of plastic to keep him warm and he was placed on my chest. My son’s warmth at that moment is unforgettable.

After a few seconds he was taken from me as he immediately needed all the support he could get. He did not cry but I was somehow calm because I felt his heartbeat and, although with difficulty, he was breathing. I instantly told my husband to follow our son because he needed his daddy. I told him he can put his mind at rest as I was feeling alright and I was well taken care of. At that point, the nurses asked me if I would like to breastfeed my son. I told them that I would like to but that it is probably too early in the pregnancy. To my amazement, and with the nurses’ assistance, my body actually produced milk. My husband arrived some time later with a few other doctors and an incubator. My son was wrapped up in a green towel, and a lot of pipes and wires. I held him for the first time in my arms but I experienced a lot of fear at that point. I did not want to hurt my son. I did not know how to handle him and what was OK to do and what was not OK.

At 3AM, we were asked if we would like to see our son. Of course, I was so eager to see him and where he was laying. There he was, in Bai 2, Room 209. I still remember the blue lights, the monitors, the alarms, the pressure band aid around his arm, the three wires (yellow, red and green) on his tiny body, the big oxygen pipe and the drape helmet to keep the pipe from falling off and to keep his head warm. The hospital protocol was explained to us (the door card was given to us, how the breast milk system works, how the breast pump works, who can visit, etc.). I did take all the information in but I had one question that I needed answered at that point. Will I ever take my son home and be a family building memories? I explicitly asked this question to the doctor that was in the room with us and her reply was, “Of course you will!” That answer, whether it was completely reliable or not, gave me huge hope. Indeed, after 90 days, at 37 weeks, our son was home.”

Challenges

“Today, almost 2 years later, people ask me what I felt during that period. It was a burst of emotions at the same time and these emotions were continuous: fear, guilt, uncertainty, hope, joy, luck, warrior spirit, despair… Our parenting journey started off in a different way that we thought it would be. We had to learn to change diapers so small that no supermarket or pharmacy sells them. We had to learn to read the blood pressure of our son, his temperature, and how to handle him through all the wiring. We had to wait a lot: we waited 3 months to bring him home, 2 months to hear the first moans and almost 3 months to hear the first cry. We had to press the red but and wait for assistance each time we wanted to kangaroo care our son. Eventually, we had to wait longer to see him do tummy time, to see him sit and eventually crawl and walk. But guess what? He made all of it.

Besides having to learn to do things usually a parent does not have to learn to do, and besides having to wait when in normal circumstances such waiting is not necessary, my challenges as a parent and a mother of a preemie were several, and some still are. I will mention two major ones in this post: the breastfeeding journey and the family relatives’ reactions. The breastfeeding journey was immensely difficult. We reached a point where I did not have enough milk because the baby’s contact with me, for obvious reasons, was not as much as both mother and baby needed. It was tough to pump milk day and night without having the baby close or at sight. I was also a Licentiate of Canon Law student at the time and I had exams coming 6 days after I gave birth. I always produced more milk after an exam than before. At this point, I started to understand how a mother’s body works. I constantly asked questions to the lactation consultant at the hospital. I drank a lot of fennel tea and I was prescribed Motilium, which is found to increase lactation. I even started pumping for milk every 2 hours instead of every 3 or 4 hours – nights included.

The second challenge was the way family relatives reacted to our situation. My Italian husband and myself (I am from Malta), had just moved to Belgium to study at the university, so we were pretty much alone in this, in the middle of a pandemic. We updated our relatives over the phone, with pictures, videos and calls. Mattija is the first grandchild from both sides of the family and consequently, everything was new for everyone involved. Some relatives were very compassionate, others were not. Some thought we were very strong, others thought we were exaggerating. From the hospital, my husband and myself had to start creating boundaries and rules to protect our son and this was a daunting experience. We had family relatives that followed these rules and others who did not. So, we did not feel understood most of the time. Yet, we made as many changes as it was necessary to protect our preemie. Parents of preemies have a challenging start, the bonding they wish they have takes time. In my case, it also took me a lot of time to gain the mother-tiger instinct and I felt guilty about it. Of course it takes time when you are used to pressing a red button for assistance before handling your baby. But do not be afraid, it will come.”

How is Mattija doing today

“Two years later, and here we are. My son is almost 11kgs, and 95cm tall. He understands Maltese, Italian, Dutch and some English. His vocabulary is increasing everyday and he loves books. He spends hours flipping books, changing languages and pointing and repeating the words he has just learnt. He is stubborn, mischievous and an intelligent warrior. He has a short temper, like most of us Mediterraneans but I am to blame for it for he gets that from me. He grow handsome and looking more like his father everyday. He notices every little detail and knows exactly who truly cares for him. He loves to eat a large variety of foods (vegetables, fruits, diary, grains, chocolate, ice cream, and so much more). He is a teaser and a cheeky monkey. He still likes breast milk before he goes to sleep and he graduated from physiotherapy last July. On October 19th, he walked down with me to the podium when I received my licentiate certificate.”

What we would like to say to other preemie parents

“Dear parents of preemies, do not give up. The journey is challenging but it is not impossible. Obstacles will come your way, sometimes from those you least expect it. But you are the pillars of the family, you are who your children are counting on. Stay united as a couple. No one understands your situation as much as you two. You are your children’s world. You are all they have. Have courage, have faith, good days will come. As long as there is a heartbeat, there is still hope.”

– Brenda